The parents of a fatally ill infant with a brain condition, hope her heart can save the life of another baby who's heart can't get enough oxygen to her body.

Jason Wallace, centre, and his wife, Crystal Vitelli, meet with Kevin O'Connor, whose baby daughter Lillian needs a heart transplant. Wallace and Vitelli received word April 6, 2009 their daughter Kaylee's heart is strong and may be considered for donation.

By:Emily MathieuSTAFF REPORTER, Published on Tue Apr 07 2009

On one floor, a tiny life is ending. On another floor, a sick baby is waiting for a new heart.

Last night, the family of 2-month-old Kaylee was making plans to say goodbye.

"We will take the machine off and say our goodbyes and have her go. ... She will pass away in front of us," said her father, Jason Wallace, holding his wife, Crystal Vitelli, as they explained yesterday how they foresaw Kaylee's final moments in the Hospital for Sick Children.

As they prepare for the death of their daughter, who has a serious brain condition, there is one thing that gives them hope.

One-month-old Lillian O'Connor suffers from truncus arteriosus, which means her heart can't get enough oxygen to her body. She is doing well for someone with her condition but needs a transplant.

And against all odds, Kaylee's parents hope their daughter's heart will be suitable for donation to another baby, maybe even Lillian.

They got in touch with Lillian's parents, Melanie Bernard and Kevin O'Connor, both 31, and offered them Kaylee's heart when they found out their daughter was dying.

"They were just letting her heart go to waste," said Kaylee's 20-year-old mother.

The complicating factor is no one can predict how long it will take Kaylee to die. The longer she stays alive after being taken off a respirator, the more her heart would be damaged and the less viable it would be as a donor organ.

"If Kaylee passes away within a reasonable time and it doesn't damage the heart," then the odds improve, her 34-year-old father explained.

Yesterday afternoon, Kaylee's family was told their daughter's heart was strong and that doctors would make every effort to remove it in the hopes it could save another child.

Later, the fathers of the two girls met in the hall of Sick Kids, embracing at the news that Kaylee would be considered a donor – although it's still too early to tell if the heart is viable, or if it will go to Lillian.

"If it works for us, if Lillian gets the heart, fantastic," O'Connor said. "If it works out for another, sicker baby, fantastic."

Turning down a donor heart is in keeping with stringent medical standards designed to protect donors and patients, explained Frank Markel, president and CEO of the Trillium Gift of Life Network, speaking generally about transplantation.

For a patient to be a suitable candidate there has to be a "reasonable expectation" the patient will pass away within a specified period of time once life support is withdrawn, he said. If the patient takes longer to die, "organs are not useable because they have received very little blood flow."

The Canadian Council for Donation and Transplantation guidelines are generally two hours, but experience shows that 30 minutes is the outer guideline, Markel said.

If Kaylee holds on beyond the length of time considered a safe standard, then doctors will step away and she will die with her parents.

"She has a strong cry" and loves to hold her mother's hands. "She is very strong," her father said.

Kaylee was born with Joubert syndrome, a malformation of the brain and brain stem that prevents her from breathing without a respirator. She also has severe problems with her kidneys.

From the moment she was born, Kaylee's parents knew their time with their only child was going to be short. But they had no idea anything was wrong before then. Her mother had seven ultrasounds and nothing was seen to be amiss.

They said that if they had known how severe their daughter's condition was, how short her life would be, they probably would have decided to end the pregnancy.

"We thought we were going to be able to have a normal life, take her home, do what a normal family would do," her mother said.

Kaylee has spent her entire life in the hospital, although at one point her health stabilized and her parents were told they could take her home. But last week she took a turn for the worse and was put on a respirator. That is when they knew the end was near.

"She is tired," her father said. "She is at the end of her journey"

Kaylee has been baptized. Yesterday a steady stream of family and friends arrived at the hospital to say their final goodbyes.

"We are not trying to be heroes, we want our daughter to move on, to give another child that chance at life," her father said.

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